[Ski]

#1063813

As you’ve noticed, there’s no easy fix, and all of us are different. That said, here are a couple of things to think about. Most doctors recommend a year or two on ATDs before attempting remission (meaning, stopping the ATD), but most patients achieve stability long before that period is up. The fact that you were so sick, began the medication, then completely STOPPED the medication, is likely the more obvious cause of the volatility in your levels, vs. simply using ATDs. Perhaps beginning again at a lower dose than you started with the first time can help you maintain something that is more even.

Perhaps more frequent blood tests, at first, can help (and pay particular attention to T4/T3 vs. TSH at that point).

Remember, as long as the thyroid is intact, there is a potential for the antibodies to create volatile thyroid hormone levels, which doesn’t exist once you’ve been treated with a more permanent choice, such as RAI or surgery. Finding a good dose/good level can be easier, in some respects, when you’re starting from "zero," and you don’t have the complication of the antibodies being stimulated and mucking things up (this is why many U.S. doctors go straight to RAI).

Take note of the fact that when you see people here who are having trouble finding their perfect dose/level, those who are NOT having trouble do not visit. Those who have a hard time are definitely in the minority, and there can be many factors as work. Again, we are all very different.

It is a VERY personal decision, your treatment choice, and people make their choices based on very different criteria. The most important thing is getting treated, somehow, so do all of your research and find the treatment choice that seems to appeal to you most. It’s certainly okay to use ATDs in the meantime to bring your levels into the normal range so you can get some peace of mind while you make the decision. You may want to have a discussion with your doctor about the best possible way to find the right dose without going up/down so much. They may have some good suggestions. It may be fine to bring your levels down *some* rather than *all* in order to tweak your perfect ATD dose.

[Ewenme]

#1018297

Promised an update(original post entitled "Waaa.."), so here it is. After 2 months off of my ATD (had been on them for 4 months, then became HYPOthyroid so my endo said to quit taking them) and while out of town, I developed HYPER symptoms again (rapid heart beat, irritability, shaky feeling). My endo faxed an order for lab tests to where I was staying last week Friday. Came back home Tuesday, had an appt yesterday (Thursday). They had to call to get my results. Indeed, I am again hyperthyroid. My TSH went from 6.29 down to .02 in two months. So I am back on 10 mg Methimazole again. I had actually started taking it again even before my appt, though I was told they couldn’t suggest a dose for me until the lab results were in (i wouldn’t been a week without meds if I had waited for them).
I am wondering if it’s easier to stabilize the level of synthroid after having RAI/thyroidectomy than it is to regulate the level of ATD’s one has to take to remain at normal levels. Am beginning to think RAI might be a better route to go. However; just read another post by a person who is having difficulty getting their synthroid level right. There is just no easy or quick way to get this under control, is there?
Wonder how long on average it takes for this to be regulated with ATD’s . My doctor said 5 months is not long enough (I was diagnosed in March). I am guessing maybe a year?
Joy from Mi

[Ewenme]

#1063814

Thanks, Ski. I also questioned the wisdom of cutting off the ATD’s cold turkey. I am considering the opinion of another endo (which I yet have to find). Also think RAI is the route to go. My doctor is from Europe (where they do not do RAI), and my husband is very opinionated and agrees with his approach. I have never been overly assertive, which makes it somewhat difficult to be in control. I have been told by my European endo that I can have RAI anytime I want it, and am thinking I will go that route eventually. Personally would choose throidectomy except I am a big chicken when it comes to going under the knife. Will keep you posted. This is not an easy decision. Sending warm thoughts and wishes to all my Graves family. It’s great to know you’re out there.
Joy from Mi

[snelsen]

#1063815

Hi Joy, I agree with everything Ski said in her great response to you. Certainly, there is an option other than suddenly stopping the ADT’s, and/or trying a smaller dose. Keeping track of how you re feeling, reporting to endo, relatively frequent labs, especially when the goal is to get you to a place where you do not feel so sick because of having (either) too many or too few thyroid hormones on board-will help you move though this time with the best chance of beginning to feel better again.
When hyper, it is HARD to feel rational and objective about ANYTHING, because of all the effects we feel when we have too much thyroid hormone running around. So as Ski says, when you reach the goal of being neither hypo or hyper, everything is easier for YOU to think about.
I cannot emphasize strongly enough how important it is for you to really believe you are doing what you choose to do when you decide on a treatment plan. It is not uncommon in many health situations when a family member has a strong opinion which may differ with the person making a health care decision. My own experience in this situation is a fairly typical one. I had breast cancer, I definitely wanted a mastectomy, my husband did not want me to have one, he wanted me to "save my breast."
From my view, saving my breast, was saving the ENEMY!!! I could not bear to keep my enemy. In the end, I had the surgery.
The most stressful part for me was the pressure to do what someone else thought I OUGHT to do for their reasons. I felt SO GOOD about that decision.
This is not an uncommon situation, and to reflect when is frequently stated on this board, the people who have weighted the pros and cons for THEMSELVES, weighing in the objective factors, almost always feel content with the decision they made.
Many choose surgery because they did not want RAI, many choose RAI because they did not want surgery. The personal reasons do not have to be rational, necessarily.
I sure hope you feel better soon now that you are taking ADT’s again, remember that how you feel, the labs and the dose all have to be monitered during this time.
(If you go for a 2nd opinion, take copies of labs, and reports of visits to first endo. You will need to sign a medical release of information form if you haven’t already. Good to keep your own records.
Shirley

[Ewenme]

#1063816

Hi, Shirley–appreciate your thoughts. I, too, had breast cancer (1991), and my husband had very definite opinions on the way that went, too. I guess I (or should I say ‘we’ )made the right decisions, since I am alive to talk about it. I had a lumpectomy and radiation at that time. As I write this I wonder if that has any effect on my choice of treatment as far as RAI goes. Must ask my endo about that.
I agree it’s a good idea to keep track of everything so symptoms can be correlated to what the lab values say. I have been monitoring my vital signs very carefully to make sure my heart rate doesn’t go high again. I feel ok right now–never got to the point I was when this all began. I guess you learn to ‘read’ your feelings as time goes on. I knew when I was getting hypo, too. I will start keeping a more careful journal asap.

[Kimberly]

#1063817

Ski wrote:Perhaps more frequent blood tests, at first, can help (and pay particular attention to T4/T3 vs. TSH at that point).

As someone who has been on ATDs for close to 3 years, I could not agree more with this comment. ATD dosing is part science, part art…and the fact that TSH can remain suppressed for *months* in Graves’ patients can make things more complicated. Some docs see a low TSH and don’t reduce our initial doseage quickly enough because they assume we are still hypER…when in reality the Free T3 and Free T4 might be in the normal range, or even on the hypO end.

As for time frames, every patient is different, but just for reference, I went from hypER to the top end of the "normal" range in about two weeks. Then to the bottom end of the “normal” range after another 6 weeks. Then about a month after that, my levels were in mid-range. I am “stable” in the sense that my thyroid hormone levels are in the “normal” range, however, I have had my doseage tweaked about every three months.

I’m sure that others will chime in with their experiences on RAI. But if you choose to go through another round on the ATD option, try to get your labs done in advance of your actual appointment with the doctor *and* ask for a hard copy of the labs at your appointment. If you see your FT3/FT4 falling into the “normal” range, but your doc isn’t adjusting your dose because of suppressed TSH, don’t be afraid to speak up and ask why. Paying close attention to FT3/FT4 can help you get dosage adjustments in a more timely manner, which will get you to a “maintenance” dose more quickly…as opposed to dealing with the hypER/hypO rollercoaster.

Best of luck!

[Ewenme]

#1063818

Well, I’m definitely hyper, as I am writing this at 2:30 am. I had been encouraged by your success controlling your GD with ATD’s Kimberly, and hoping to have similar success. I looked at my labs again (I have copies of all of them), and if I had been given a lower dose when my free t3 and t4 were normal (and my tsh was still low) it would have been in June. I assumed my endo knew best, but as you stated, this is an art as well as a science, and I think I have particularly erratic in my hormone levels. Probably another good reason to get RAI. Going into the holidays is probably not a good time to go through the process, so am thinking I will continue this course of tx and if things haven’t leveled out and gotten a LOT better by the first of next year, I will consider permanent options.
Thanks for your replies Kimberly and Shirley (I see you just had eye surgery, so am doubly grateful. Happy to hear you’re recovering uneventfully). I will try and be quiet now ” title=”Smile” /> Maybe even get some sleep?
Joy

[Kimberly]

#1063819

Hi Joy – Hope that you got some sleep! Keep in mind that if you decide to go the RAI route, you will still need to exercise the same level of vigilance on your labs until you are stabilized. The best scenario is if you can get an open lab order that will let *you* control when you get new labs done, if you start to feel hypO symptoms come on. And be sure to check Free T3 and Free T4 as well as TSH – at least until your TSH rebounds and becomes a more reliable indicator.

I’ve known patients who ended up in major hypO territory because their doctors saw a suppressed TSH, assumed they were still hypER, and delayed starting a replacement regimen. For patients who are stable on replacement hormone, TSH is the preferred test…but it might not be the most reliable benchmark early on.

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